The Comprehensive Epilepsy Center, part of The Saint Barnabas Institute of Neurology and Neurosurgery, is seeking individuals with epilepsy to participate in a research study designed to understand how genetics influences epilepsy.
The Epilepsy Phenome/Genome Project (EPGP) is the largest research study of its kind to understand what causes epilepsy, why people respond differently to anti-seizure medications, and why some families have several people with seizures. The study is attempting to determine the role of heredity in epilepsy by identifying specific genes related to epilepsy. Identification of the genes that raise risk for epilepsy is potentially very important for early identification and treatment of susceptible individuals. EPGP could also provide important basic information about the causes of epilepsy. This information could lead to the development of new treatments or strategies for prevention.
Orrin Devinsky, M.D., Medical Director of The Saint Barnabas Institute of Neurology and Neurosurgery and Professor of Neurology at the NYU School of Medicine views EPGP as "the opportunity of our generation to revolutionize epilepsy care. It could allow us to match safety and effectiveness of a drug to a specific person, focus research on new therapeutic targets and crack the code on the causes of common forms of epilepsy." He added, "we need siblings with epilepsy to answer these questions."
To understand the complex genetics of epilepsy, The Saint Barnabas Institute of Neurology and Neurosurgery is seeking pairs of siblings (i.e. brothers and sisters) and parent-child pairs who both have epilepsy not due to a known reason such as stroke, head injury or brain infection. In addition, they are looking for those who have seizures due to Infantile Spasms, Lennox-Gastaut Syndrome, polymicrogyria, or periventricular heterotopias. For this second group of people, a sibling with epilepsy is not required, although both biological parents (without epilepsy) are required to participate. Although the results of the study will apply to many different people with epilepsy, focusing this research effort on very specific types of epilepsy will allow the genetic analysis to be completed faster.
Study participants will be asked to donate a blood sample and answer questions about their epilepsy. There is no cost to participants for any aspect of the study and all information will be kept strictly confidential. This study does not involve genetic testing. Participation does not require travel to Saint Barnabas and participants may receive a small compensation for their time.
This study, funded by the National Institutes of Health/National Institute of Neurological Disorders and Stroke, will help shape the future of clinical care of people with epilepsy. For the project to be successful, it needs to be a huge collaboration among all of the people with epilepsy in our country. If you and your brother or sister have epilepsy, or if you meet the other criteria above, please consider being a part of this history-making research project. To learn more about the study, visit www.epgp.org, email firstname.lastname@example.org or call 1-888-279-EPGP. To contact The Saint Barnabas Institute of Neurology and Neurosurgery, please call 973-322-7580 or visit www.saintbarnabas.com.